Hello. I have only posted once since I learned recently of this site but I have found it nearly impossible to get through most days lately without logging on and reading everyone elses posts.
Anyway..I am going on Friday to meet w/ the oncologist who will tell me his opinion of whether or not I need radiation. I have had early stage cancer twice in the last 3 years on my left lateral tongue. The cancer was removed both times surgically. Of course I strongly wonder if it was ever really gone the first time since it came back but I guess I'll never know. Needless to say I am terrified about the idea of radiation because I have been trying to learn all I can about it & the reality seems a little bleak as far as going through it.
All of you seem soooo strong that I keep wondering "how do you do it????" If I could just exit my life for a few months & get the treatment(anotherwords..not have to worry about the fact I have 2 kids counting on me every day, a husband that is great but is a truckdriver that has to be gone most days & nights to make our living, a job that doesn't pay much but that I have to keep to provide our insurance) the list goes on & on & I just want to know how do people that need radiation &/or chemotherapy get by during the process.
Please forgive me for feeling incredibly sorry for myself right now but I am so scared about the effects that the treatments to the mouth area can do(have I been reading too much on the side effects?) during & possibly after the radiation that I don't know how to be brave right now. Please give me some advice & or encouragement that there will be a way to do this!

Elizabeth, Let me start by saying that you are not alone in the unsurety dept. We have all been there.

Here is what advice I can offer...

I wasn't the patient but I had many of the same concerns. The main one was how were we going to make it with my having to do everything that always seemed to us to be a 2 person job. The house, the jobs, the kids, etc.

What I discovered was that life makes time for things that must be done. As you travel this road you will find that you will make adjustments as you go and find your way through. Don't let all of the experiences you have read about scare you. Instead use them as a worst case planning tool. Know that everyone here who has experienced rad tx have all had different experiences. Yours will be unique to you. But you are obviously strong and you know that motherhood certainly helps in that department.

So step back a moment and take a deep breath. Take each day as it comes and try not to overwhelm yourself with worries for next week. For a little while when tx begins you will notice probably little. Most of the people I have read here and my husband as well didn't see any immediate affects from the rad. Are you having chemo as well? It will make a difference in how your body reacts.

To asnswer the question "How do you do it?" is simple and complicated. I heard that question so many times from friends and family members and it was always followed by, "I wouldn't have the strength to do what you are doing."

I have a simple response... you do what you have to and you never really know what you can do until it is there to be done. The truth is I didn't think about how I could do it, I just did. And Harry just did. It was challenging, difficult, sometimes overwhelming, but everyday we met the challenges of that day and before I knew it we were becoming pros. Like anything knew in life, there is always uncertainty in the beginning but as you go along and gain experience then you get better at it.

You will be fine. Don't be afraid to ask for help, stay focussed on beating the disease, and keep the good thoughts in mind even when it seems most difficult to do.

You CAN do this, you WILL do this, and most important.... YOU are NOT ALONE!

Lean on us when you need to and we will offer whatever advice we have to give. We all showed up here just like you, scared, confused, uncertain... and together we have helped each other through the good, the bad, and the ugly.

Hang in there and you will be fine!!!

All my best!
Cindy

Hi Elizabeth,
You can't let all of this outside stuff shape your treatment plan or decisions. First and foremost is to survive the disease. I take it this latest recurrance is #3? You need to get a consensus from your complete team, including a radiation oncologist. This is why we always recommend a CC or CCC if at possible because you will have access to a coordinated medical team which is vital, especially since this is not your first go around. The tongue is made of very tough. fibrous tissue and more difficult to treat than tonsil cancers for example - if it were me, I would be taking as agressive an approach as is possible based on the history.

Radiation is no walk in the park but some have continued to work and drive themselves to treatment. Many of the experiences shared here are the worst possible case as well and you may just cruise through it. You will be fatigued and unable to keep up your normal pace for a while.

My wife was available all of the time and we still needed a support network. Even with a fulltime caregiver, it can be too much for them and the load must be spread out. Churches are great places to find help, also talk to the hospital social worker. The average person takes one month of recovery for each week of radiation. What about family, friends, neighbors, etc?

Most of us weren't as brave as you think. A lot of us took antianxiety meds and antidepressents when needed (me included). We were all scared out of our wits also (sometimes I still am). I can certainly relate to your fear. You can only take it one day at a time - that's what got most of us through it.

Recurrences when surgical only approaches are done are too common in my humble opinion. The chances of a few remaining malignant cells to still be around and manifest themselves into something visible in a year or two is a story that I hear happen way too often. These micro mets don't show up in the margins which the doctor says are clean. They may be as remote from the surgical site as the cervical nodes, in amounts that are so small that conventional scans can not see them, and they certainly can not be palpated by the doctor's fingers. This is routinely referred to by the doctors as a recurrence, but in my book it is incomplete original treatment. This is why everyone here always talks about getting a team approach of surgery, radiation, and maybe chemo to ensure everything is REALLY gone. If members of your team think you only need surgery and radiation or whatever, you are getting the opinions of doctors from different disciplines, that are COMPLIMENTARY and overlapping. That is where you get the best results. Seeing a single doctor with a single opinion, no matter how experienced he or she is, is not the best idea in my book.

Also no one going through a cancer diagnosis is strong. It is scary no matter how tough you might appear to be on the outside. We are all alike in this respect. But you need to get through the fear, set your mind on the end result when the treatments are over and jump in. This cancer is very unforgiving of half measures

Elizabeth, Gary makes a good point that much of what you read here is about the problems some patients experience. I had radiation to both sides, 37 treatments, and was able to continue regular things around the house, such as laundry and preparing meals for my husband. I do not work, and frankly, would not have had the energy to for about the last two weeks of treatment and for three weeks after that. I also had chemo but was not sick. I had mouth sores and took my nutrition, medications, and water through a PEG tube, which terrified me until I awoke with it and found out it is not a big deal. I am no spring chicken but I was back to running and my active social life five weeks after the end of treatment, so the one month for every week of treatment healing schedule is not necessarily set in stone. I was not completely healed, but my energy had completely returned. The only thing I could not have done by myself easily is change the dressings on my neck, which burned much worse than anyone else seems to have experienced. I did not suffer pain from this as I was given very good drugs. Depending upon the ages of your children, they may be able to be a great help to you. Bottom line, you need to be very aggressive in your treatment, but remember that I, who had a stage IV tumor with involved nodes, expected some kind of evil torture, and actually had a pretty good time because of the really terrific people who worked so hard treating me. Cindy is correct that you can and will do this, and Brian makes an excellent point that fear will not help you at all. If you can step back and see the big picture, a few weeks out of your life is a very small part of it, and the payoff is priceless.

Elizabeth - Unfortunately, either you deal with the cancer, or it will deal with you. Many depend upon you and they will be inconvenienced while you are in treatment. You may not be able to do all of the things you are currently doing for a while. But, treatment, bad as it might be, eventually gets better. A lot better. Cancer does not get better. It just gets worse.

Fear is anger focused in. Be afraid of the cancer, not the treatment. After this initial fear calms a little, you will see the right path opening for you. Your experience in treatment will be unlike anyone else's. Some parts might be hard, or they might not be too bad. No matter. You take them on one at a time. One moment at a time. Then you move on. Focus your fear - point it at the cancer. Let it turn into anger and determination to win. You can win - but only if you fight. We can help. Get focused. Be strong. Tom

Elizabeth,
First and foremost you must tell yourself that this is something that you CAN do. I must say that it does help to have a support net work of friends, family and co-workers. I live alone so there were moments when it was tough, being alone with your thoughts can be a living hell, it was for me until I found this web site, it was a true god send. I found that I needed rides to and from the treatment center most days, however there were days that I did it myself. Always remember elizabeth your treatment is X amount of days then it is over and you can begin to heal, attitude is everything, but never be afraid to cry to feel frustrated and to be scared out of your wits, those are all very real feelings and you cannot deny them you just have to work with them. You WILL get through this, just keep pushing my dear and if you have that network of people to lean on do so, people like to help, are not put out and you will some day be in the position to contribute to others well being, get going girl, take on the fight and kick cancers ass.
always lenny

Elizabeth,

I have to agree with Cindy's comment that life makes time for things that must be done. When I was diagnosed, it was at a truly hectic time of year in my business, and one of my first responses to my oral surgeon was that I wouldn't really have time to deal with treatment issues for several more weeks. He gave me some rather tough talk about rearranging my priorities and told me that my colleagues would have to pitch in so I could get going with the tests and treatment ASAP. I found out after the fact that he also had separate conversations with my husband about the urgency of the situation.

You're right that the prospect of radiation can seem terrifying when you haven't experienced it. While I felt really miserable for the last several weeks of radiation and quite a few weeks after that, I was still able to go to work part-time and drive myself to my treatments. The healing process can seem slow and frustrating at times, but as more time has passed, I've been left with fewer and fewer "souvenirs" of radiation, and I've never regretted following my doctors' advice to be aggressive in attacking this disease.

Cathy

THANKS TO ALL OF YOU!!!!!!!!!!!!!!!
I just got home on my lunch hour & couldn't wait to check here. I can't say enough about how much it helps to have this website(forum) to go to. I know that I can do this,whatever it may be, I just need somewhere to go to show some of my fears because the support I do have from my family & friends(& church) is great but I can't help but feel that if I am not strong around all of them that it just makes it so much harder on everyone so I am trying to keep my chin up so to speak.
It is impossible to describe how grateful I am to have this place to turn to. I do believe in God and don't think I caould get through this if I didn't, but it is wonderful to know that you all are there & I hope to be of some support to others too.
Gary..this isn't #3, I just had surgery on my tongue on Jan.12 of this year(1st surgery was Jan'03) and the ENT wanted me to let my tongue heal before going to the oncologist.
I do plan on getting a 2nd opinion no matter what the doc says tomorrow(to radiate or not to radiate) because like you said Brian it is good to have several docs opinions & not just one. If you know anything about a CCC in Augusta, GA. called Medical College of Georgia I was told by the CCC in Chapel Hill, N.C. that that is a CCC in Augusta & that they are even doing clinical trials which can bring in good docs so I am planning on going there hopefully to get a 2nd opinion.
My ENT doesn't think I need radiation this time either but he did say that he would rather let them(oncologist) make that decision this time since I had cancer 3 years ago in somewhat of the same area of the tongue.
Thanks again for all of your responses. I have got to get back to work now.

Elizabeth,

I just wanted to second what everyone here has said. None of us are "strong", we're just dealing with the hand we got dealt. A year ago was my partial glossectomy and neck dissection and I've had a lot of memories the last couple of days of how truly terrified I was of that, and then after how truly terrified I was of radiation. Valentines Day a year ago, I was told I had stage I breast cancer as well. I went home and cried for hours--which was not very comfortable since I still had stitches in my mouth and staples in my neck!

When people offer to help you, let them. Family, friends, church, whoever is willing. And don't feel you have to be strong around them. You don't. Talk about your fears. It's normal to be afraid of the treatment but, as others have said, balance that against a healthy fear of what this cancer can do to you if left inadequately treated.

The only strength I found to face my treatment was that I was just so scared of dying young--there's so much more I still want and wanted to do with my life! I got angry that cancer was threatening that and that anger gave me a determination to use a scorched earth policy on the cancer (even though the scorched earth was and is my mouth!).

I think I have had a much worse time recovering than the average person here, probably partly because I was also dealing with treatment for the breast cancer --as my breast surgeon said the other day when I saw her for a followup--I got hit by a BIG truck being treated for those two at once. But despite all the recovery issues I've had and still am having, I don't for one minute regret fighting this disease as hard as I could. By the way, I actually taught an online class through most of my chemo and radiation treatment (all bujt the last two weeks of it) so even though I was hit hard it wasn't like I was totally unable to do anything at all. You'll find that's probably true for you too.

Make no mistake, the people here who seem strong are people just like you. Cancer doesn't selectively hit strong people. But fighting it requires a strength I think we all have deep down and you have it too. You can do this. We'll be here for support.

I'm glad you are going to a CCC for an opinion. I think if it were me, if the cancer had come back I would want to throw everything I could at it this time around.

Nelie